Posted
by
samzenpus
on Monday January 16, 2012 @12:08PM
from the taking-your-life-in-your-hands dept.

Hugh Pickens writes "Roni Caryn Rabin says patients have a legal right to their medical records, though access can prove difficult. But what would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them? A research collaboration called OpenNotes set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records and demonstrating that for patients, at least, shared medical records seems to be an idea whose time has come. 'That's the great challenge in medicine: getting patients to be more active in their own care,' says Dr. Tom Delbanco, a principal investigator of the study. 'What we're doing is opening the black box and letting you look inside.' Dr. Delbanco and his colleagues recruited more than 100 primary care doctors who were already using electronic health records to volunteer to share their medical notes with patients. Patients were enthusiastic: 90 percent thought they would be more in control of their care if they saw the notes. They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication. The goal is to engage patients more fully in their own health. 'Knowledge is power,' says Jan Walker, the study's senior author. 'A patient goes to the doctor only once in a while, but in between visits, you're making all kinds of decisions that affect your health every single day.'"

Seriously, if patients take the records home with them, then what. I don't personally have any knowledge that would allow me to understand the records. Most folks probably don't know how to secure them properly.

Sure people do have the right to see those records, but that doesn't necessarily mean that they should be encouraged to take them home with them. Of course make it clear that they can look or take copies if they like, but encouraging it seems like a poor idea.

Plausible deniability. Once you take your records home, your physician is free to sell them to anyone. If you discover a copy of your records out there in the wild and complain to your physician, he'll just say you must have lost control of your copy.

Well, one thing they will certainly be used for is the basis of frivolous lawsuits - when that morbidly obese patient takes issue with his doctors notes on his "McDonalds addiction" and total lack of medical reason for the fact that he has size 60EE man boobs, guess where it's going to end up?

Here in Norfolk, UK, Doctors used to use two terms in medical notes up until the late 1990s (or even later - my wife still sees references to them in notes from 2003 or so), Funny Looking Kid and Normal for Norfolk. The terms refer to congenital issues found in children in the more remote parts of the county, where incest and small breeding stock is still having knock on effects today. The terms were banned after they became legal issues in cases after patients got hold of their notes.

"They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication."

I had to laugh at this finding. I am a non-clinical worker in the healthcare industry and hold a post-graduate degree. Still, it takes a good deal of effort for me to fully understand a typical raw medical record. Assuming you get past the jargon used in most records (no small feat), you then have to see the big picture, which may or may not be spelled out in the record.

One huge issue is that providers have no motivation to chart with the idea that a patient will end up reading the record for substance. The primary motivation for most providers is to create a record that (i) will be understood by other highly educated medical professionals and (ii) can serve as the proper basis for creating a proper bill. I cannot think of a system that is less geared toward creating material that an average patient can understand (except, perhaps, if the record were in cuneiform).

I recently negotiated the purchase of a software program that takes a physician's instructions to a patient and suggests edits such that a 6th grader could understand the instructions. All written patient instructions are being run through this system at our hospitals (subject to ultimate review by the doc before they are handed to the patient). But these same 6th-grade level readers are now going to glean substantive meaning from a raw medical record? This is either evidence of how few people have reviewed a raw medical record or, alternatively, that hope springs eternal.

We don't need Google here. All the EMR vendors have patient portals now through which you can see this type of information. Epic / MyChart is a good example. (But other vendors have something similar)

If your provider uses one of these systems, you can see your record online including test results and the notes your provider enters during/after your visit. There's even an iPhone app. I had an MRI and was able to read the radiologist's documentation on my phone.

My records are worthless to anyone but me, so why the hell would anyone want to steal them? OK, there are all the friendly insurance companies, who want to ensure that I'm not stealing their God-given profits by hiding some pre-existing condition... but they already have better access to my information than I do.

You're trying to invent some reason why people should not have access to their own records, and failing miserably.

Yes, it's your health, but that doesn't mean a novice will be able to understand what the majority of the information means. The details are rabbits that many hypochondriacs will chase until they self-diagnose themselves into oblivion.

So what? Doesn't sound to me like you're a hypochondriac (or at least one that can't manage their condition) and even if you were, I don't see how more medical information makes your condition worse than it already is.

I don't need all the details of my medical history at my fingertips.

Ignorance is bliss supposedly but it rarely turns out that way.

If I don't like their advice, or it's not successfully addressing a particular medical issue, I'll seek the advice of another medical professional (who will request a copy of my records).

Certainly, there are no end of cases of people looking up symptoms on the internet and deciding that they have a combination of ebola, bubonic plague and some obscure disease that only affected horses in 13th century Denmark

This happens now anyway. Please stop trying to protect people from themselves. Paternalism didn't work in medicine, and it certainly doesn't work in government. People are adults and ultimately are responsible for their own actions/inactions. Patient autonomy is a fundamental component of modern medical ethics. Let people live their own life how they want, right or wrong. It's very easy to tell people how to live. How do you feel when they tell you that you are the one who is wrong? Or are you never wrong?

As a doctor, I really think of your medical record as mine: what I gleaned from your complaints, what exams I did, who I talked to, and what I thought was going on and what to do about it. I know you are paying for it, but I'm the one doing the work and putting all that medical school to use.
That said, I think you should have access to it, for free, and modern electronic health records allow that: once I review a result or record I can release it so you can look at it online. I also now document in my charts with the idea that the patient or family member might read it, so in addition to the technical detail I write the plan and diagnosis in as plain language as possible, and send patients home with this at each visit. (More than half immediately lose this paperwork, in my experience.) These systems, naturally, come at significant, expense and require a fair amount of upkeep, so they are mostly available only at larger practices.
Having worked previously in a developing nation where patients were responsible for keeping their own medical records (on 5 x 8 index cards), I'm glad we don't do it that way here (I'm n the US). I need a secure copy of what's been done to you and what you're taking, and recall having had a lot of trouble reconstructing lost information from the memory of illiterate folks or damaged records that had gotten submerged in open sewers and whatnot.

My wife practices at a major medical center that has adopted this approach. Most of her patient population are non-English speaking immigrants that have no use for this piece of paper and so they tend to just throw them out anywhere convienent or leave them in the waiting room.

What's worse, is that my wife is required to give this to them at the end of their visit. This means that my wife spends almost the entire visit on the computer entering the notes instead of providing personal care to the patient. EMR sounds great in theory, but in reality it turns highly intelligent, highly educated individuals into data entry clerks. Great for the bean counters and the malpractice lawyers, lousy for the practitioners and the patients.